Question

I'm worried about my CD4 and have resistance, neuropathy and arthritis

16 May 2012. Related: All topics, Changing treatment, Opportunistic infections, Resistance.

I am on meds when I started my viral load was 225,000 and CD4 65 my viral load I was able to suppress to 75 but my CD4 went upto 114 and it is now 75 and going down my ARV are darunivir, ritonavir and raltegravir. I also suffer from small fibre neuropathy which has become more painful and can nearly not walk.

I also contracted salmonella sepsis which left me with reactive arthritis.

Please can you help me with my CD4 I am also multidrug resistant and double duel tropic.

Answer

Answer: Simon Collins

Because you are in the UK, and your situation is quite complex, if you’d like to call the i-Base phoneline I could talk you through some of the options. This is because the more unusual someones situation the more individualised the treatment information needs to be.

This can be more specific on the phone because I’d get a better idea of some of the details. It would also help to have an idea of the timeline – ie when you were diagnosed, when you started treatment and when these last counts were taken.

If your viral load is still under 100 (or perhaps undetectable now), then it means your current treatment is working. It doesn’t matter about the multidrug resistance, because you have a combination that is still active.

If your viral load starts to rebound higher, then it would be best to call so we can speak about the options. This might include getting access to new or more recent drugs that your virus is not resistant to. For example, if you develop resistance to raltegravir, a new integrase inhibitor called dolutegravir is still likely to work, but you would want to change to it earlier when you know your current treatment has failed.

Resistance sounds complex – and in many ways it is – but I think it unlikely your multidrug resistance included the drugs you are currently taking, because you have had such a great response with your viral load.

Your CD4 count may or may not have changed. These are just two results that are still pretty close to each other. If the next test is low, your clinic should be trying to find out why. Although CD4 count generally go up, this can sometimes take time. Perhaps 5-10% of people don’t have a straight forward CD4 count increase. Ask your clinic to repeat both tests to confirm them. Again, please give me a call if you think your clinic will not want to do this. Also, as your CD4 count is less than 200, I wondered whether your clinic has given you an antibiotic called Septrin? This will protect you from other complications until your CD4 count gets stronger.

The other two complications may improve. Without knowing how long they have been going on and when you were diagnosed it is difficult to give more useful information.

The neuropathy could be related to HIV as this can be a symptom with a low CD4 count.
I don’t know much about reactive arthritis, but the info on these NHS web pages is a good overview, including management, and suggests this can resolve within 6-12 months for many people.

Either way, your current pain should be carefully managed by a pain specialist team, which are often based in palliative care units. If your current pain management is not working well, please ask for this referral.

There is more information about neuropathy at this link.

I-Base also have a booklet on changing treatment and drug resistance that is online here.

We can post you a copy if you want to send your details at this link.